Objectives: To study the possible change on mode of deaths, medical decision practices, and family participation on decisions for limiting life-sustaining treatments (L-LST) over a period of 13 yrs in three pediatric intensive care units (PICUs) located in southern Brazil.
Methods: A cross-sectional study based on a retrospective chart review (1988 and 1998) and on prospective data collection (from May 1999 to May 2000).
Setting: Three PICUs in Porto Alegre, southern Brazilian region.
Patients: Children who died in those PICUs during the years of 1988, 1998, and between May 1999 and May 2000.
Results: The 3 PICUs admitted 6,233 children during the study period with a mortality rate of 9.2% (575 deaths), and 509 (88.5%) medical charts were evaluated in this study. Full measures for life support (F-CPR) were recognized in 374 (73.5%) children before dying, brain death (BD) was diagnosed in 43 (8.4%), and 92 (18.1%) underwent some limitation of life support treatment (L-LST) There were 140 (27.5%) deaths within the first 24 hrs of admission and 128 of them (91.4%) received F-CPR, whereas just 11 (7.9%) patients underwent L-LST. The average length of stay for the death group submitted to F-CPR was lower (3 days) than the L-LST group (8.5 days; p < .05). The rate of F-CPR before death decreased significantly between 1988 (89.1%) and 1999/2000 (60.8%), whereas the L-LST rose in this period from 6.2% to 31.3%. These changes were not uniform among the three PICUs, with different rates of L-LST (p < .05). The families were involved in the decision-making process for L-LST in 35.9% of the cases, increasing from 12.5% in 1988 to 48.6% in 1999/2000. The L-LST plans were recorded in the medical charts in 76.1% of the deaths, increasing from 50.0% in 1988 to 95.9% in 1999/2000.
Conclusion: We observed that the modes of deaths in southern Brazilian PICUs changed over the last 13 yrs, with an increment in L-LST. However, this change was not uniform among the studied PICUs and did not reach the levels described in countries of the Northern Hemisphere. Family participation in the L-LST decision-making process has increased over time, but it is still far behind what is observed in other parts of the world.